A case history and geography of chronic pain and paraesthesia: reflections on the co-production of functional neurological symptoms

Many medical appointments involve encounters with patients who report physical symptoms, including experiences of pain or altered sensations (paraesthesia), where health professionals cannot generate an explanation based on scans, blood tests, or other currently privileged forms of medical evidence. In these cases, the personal interruptions of illness are not easily resolved through the narrative of investigation followed by treatment. Other things are created in this absence, including patient anxiety and medical uncertainty, even patient isolation and health professional avoidance, which exacerbate the impact of symptoms. This paper recounts my own experience of receiving a negative scan for cauda equina syndrome and my subsequent search for a meaningful account of what was happening to my body. I use autoethnography to illustrate how these ‘medically unexplained’ symptoms were reinterpreted by health professionals and myself through different forms of encounter, evidence, and explanation, in ways that shifted interpretations and bodily sensations, but offered limited ideas for recovery. The account is personal, in the details of navigating the UK health services with ‘medically unexplained’ symptoms during an ongoing pandemic, and the way I found conversations around functional neurological symptoms helpful for making sense of corporeal experience. Concluding, I reflect on the importance of listening responsively to patient stories in the case of ‘medically unexplained’ or functional symptoms. Generating the possibility for patient participation in the co-production of health and care in this area is challenging but critically important given the close intersection between medical expectations, cultural assumptions, and patient experiences of ‘medically unexplained’ symptoms.